My mom has dementia for several years now, she is 86 and my dad is 90. They live alone and I travel 45 minutes to help them every other day. This has gone on for the past 2 years with my visits going from once a week to every other day. My mom refuses to have any in home care so it all falls on me to do all their cleaning, cooking, laundry etc. My mom refuses showers and doesn't get up to use the bathroom, she just sits and goes in her pants because frankly she is too lazy to get up and use the toilet. My dad does EVERYTHING for her. She has no trouble getting up when I have dinner ready! The day before yesterday she had diarrhea after dinner and it was all over the just washed sheets and blanket and all over the back of her nightgown. She sat in her chair and refused to get up so I could clean her up!!! I just showered her earlier and she refused another shower. Needless to say it was quite the fight to get her back in to clean her up. I stayed and washed everything again and wanted to be sure she didn't have another episode. I knew my dad would get little sleep that night because of worry. I've talked to her Dr several times about needing help but when he brings it up to her, she flat out refuses and he backs down. I need help, they need help. How can I get it when they refuse and they would be the ones paying for it?? I'm on disability myself and I am getting worse and worse myself, health wise. I had one lady come out from a home health care agency to talk to them but my mom was very rude to her and told her to leave. What can I do if they refuse in home care??? I'm slowly dying mentally and physically over this as is my angel of a dad. Help!!!!!
Alternatively, he can make the decision to move both of them together to long term care, where he will have the support he needs as your mother's primary caregiver.
Your mother is not lazy, nor rude - she is demented. Providing her with services in a way that she can accept will be down to the training and skills of staff.
You need to take yourself out of the way, because at the moment you're making it possible for your mother to refuse care and the burden is falling not just heavily on you, but also on your father. Work with your father to bring in professional support (and be very glad that at least he's open to suggestions!).
I’d like to suggest not asking your mother. Mine participated in the 2 hour assessment with the in-home care agency, seeming quite lucid. The reality? She still asks me everyday why I never ever mentioned to her that I was even considering in-home care. Focus on helping your father.
We’re 1.5 months into in-home care 4 hours per day (min shift) and my mother is still resistant but neither physically nor verbally abusive. “Petulant” is the best describes her. Some days she thinks the PSW is a guest. Next day she’s the housekeeper. Or a helpful neighbour. And her mind will only continue to decline.
I had to take back my life. So do you. I haven’t gotten much back yet. Baby steps. Good luck to you!
My mother also refused to let aides in (lasted less than 2 months, 1 hr/day weekdays only.) She lived alone and was 1.5 hours away, so this was Plan A to allow her to remain in her own place longer. She wasn't too bad, but it wasn't safe to just let things be. She refused to consider moving anywhere, even though AL had been in her own plans prior to dementia. After refusing to let the aides in, Plan B was a MC facility. She wanted no part of AL at that point and EC atty told me we couldn't force her and suggested guardianship. That's expensive, takes time and the facility chosen wouldn't accept committals. So, Plan B had a slight revision - fibs to get HER to reluctantly agree to go! Fortunately she was able to understand the phony letter from 'Elder Services' at the hospital that DXed and treated her cellulitis (developed this JUST before the planned move!!) that YB wrote up. She was angry, but went to the facility with my brothers (I stayed out of the move - organized and did all the prep work, but wanted to avoid being the "bad" guy!)
The situation for your parents isn't going to get any better (clearly it has already gotten worse, but it will continue to go downhill.) From what you've described, there are 3 choices:
1) you continue to overtax yourself and end up enabling further or have medical crisis yourself
2) bring in aides, despite mom's rejections
3) get them to move to a facility
#1 is going to continue to wear you down. Currently by doing all that you do, it is enabling the status quo (which won't remain static!) As you yourself noted, once a week has become every other day. It won't be long before it is EVERY day.
#2 can you schedule the aides to be there on the days that you are there - getting them to do some of the tasks while you oversee them and perhaps distract mom - this might help in her getting used to having someone else there. Any decent aide (make sure they have dementia experience and thick hides!) will be able to tolerate her behavior and may be able to diffuse it better than you can!
#3 have some chats with dad. Clearly mom isn't going to agree, so avoid those discussions with her. Point out that he isn't a spring chicken and that YOU are not either! An injury or medical crisis for either one of you could result in involuntary placement, with no option to choose the facility.
Just to be sure, yes, you ARE enabling them. By helping out, we think we make life a little better, but when it takes over YOUR life and allows them to remain in a situation they are not able to cope with, it is enabling. If moving to a facility is not an option (usually due to finances - rejection shouldn't be the deciding factor), get aides in there when you are there and wean yourself out of the caring side of things. Visits and overseeing is one thing. Doing everything for them is another and won't end well.
My other relative (living alone) had to be left unwashed or left fallen on the floor many many times before accepting home care in.
I would give it a try, but if this one is that hard to deal with, I could imagine her deciding to just go commando...
What does Dad want to do? How worn out is he?
How did that situation develop that you are the only one to help?
This is not being lazy or stubborn.
She also has no say in who helps or who doesn't. She will get used to having help. Dad will also have to get used to it.
By helping the way you are it is propping them up and enabling them to decline help that they need.
Not having help in to help your dad care for her is going to end up killing your dad or you. (In some respects I am not exaggerating that, a good % of caregivers die before the person they are caring for)
Tell dad they have 2 options.
1. Accept help that will come into the house
2. Begin looking for Memory Care for mom. And possibly Assisted Living for Dad.
A caregiver will be able to help both with day to day tasks and if dad can care for mom at night that would both reduce cost but also leave him and mom with a bit of independence for half the day.
Then ask each of them?
How much common sense/insight are you getting?
Can Dad arrange groceries, meals, medicines? Can he arrange deliveries? Arrange aides for in-home care of Mom?
Next in line in a position to help her is your dad. Does he know what he is able to do in her best interests? Does anyone have PoA for your mom so they can legally manage her affairs and make decisions for her? So, start with a diagnosis so everyone knows what they're dealing with. Next, what is the actual plan knowing that dementia only gets worse and her needs increase and her behaviors become more challenging. If your dad is allowing her to have the power to send back the only real help, then that's on him. But you must make it clear that the plan cannot be you. Yes, they will need to pay for the help. No, it can't be you. If your dad is not reasonable then maybe he's also sliding into cognitive decline. He's 90 so this is highly likely. His ability to reason and his executive functioning is becoming diminished and the stress of caring for your mom doesn't help. Who has PoA for him?
Start with a diagnosis. If she has impairment then you will need to let your dad know that he must accept and pay for in-home care so that your mom's needs doesn't burn everyone out. And the caregivers must be told that they don't leave just because your mom tells them to. This happens all the time. The PoA is the one who gets to say if they go home.
You may need to discuss their financial situation with him as this will determine just how much time they have before they need to apply for Medicaid. Care is very expensive, in-home or at a facility. If you don't get this level of cooperation from your parents, then you will need to make a decision about whether you can stay in that environment, because just being present "solves" their care problem (or so your dad thinks). Please: you need to keep in mind that if you burn out then your parents will have no one to help them anyway. You must protect yourself from burnout and this means some tough conversations with your dad and insisting on solutions that don't include you as the main player. Again, he may also not be able to make bigger decisions anymore. If necessary you can call in social services to see if they qualify for in-home help from the county. Do you have siblings? Even if they're out of state, you should loop them in so they also are informed of what's going on, even if they don't offer to help. I wish you much wisdom and peace in your heart as you try to get your mom a diagnosis.
I would vote for moving your dad to a nice assisted living facility.
Maybe mom will follow?
Have you considered getting guardianship if she is no longer competent?